Benefits and Disability: Have we got this all wrong?

Today, I am troubled. I’m troubled by conversations I’ve had over the past year or two. They keep replaying in my head. They go something like this:

“….so that’s why I am campaigning against the incredibly strict mobility criteria created for the Personal Independence Payment. If we are able to walk more than 20m, then we loose access to motability cars or adequate financial support for transport. Whether we can walk more than 20m but cannot walk the 25m to the nearest bus stop doesn’t matter – we still loose this support.”

“But there has to be a cut-off doesn’t there?”

“Perhaps, but I’m deeply concerned that the consequences of these reforms are not being considered at all. What is the purpose of making up an arbitrary distance by which to measure people, which has no basis in research nor has appeared in any other governmental documentation or impact analysis? The impact on our ability to get to our medical appointments or get to the office for the day’s work is just not being considered at all.”

“But there isn’t enough money”

“Isn’t enough money to what?”

“To give everybody benefits”

In my experience, the discussion about whether money is ‘available’ or not tends to enter the discussion incredibly early, and dominate. Which does not seem to be the case for other services and funding provided by the state like pensions or children’s nursery provision – money is a factor but not the first and only discussion point. There is something that really scares me about this. My instinctive reaction is to be hurt by it. I could not understand why people would, in my eyes, reduce the provision of measures for independence in life immediately to cold costs. I couldn’t put my finger on what the problem was. I think it’s more constructive for the conversation to lead with rights and equality, rather than money.

To begin with, I believe the media and, devastatingly, our politicians have a lot to answer for, continuously focusing on the ‘scrounger’ character. It’s incredibly damaging. And then there is how the public are sold a one-dimensional characature of a ‘Disabled person’; a single story. Once you take away personalities and the rainbow of personal stories that make up a life, you take away humanity. One of my favourite authors, Chimamanda Ngozie Adichie, explores the danger of a single story in her TED lecture. There becomes a great divide between people. Sweeping judgements are made. Stereotypes take the place of a person. A friend. A family member. And then empathy and understanding disappears down the plughole.

But I felt that there was something else going on, something deeper. I couldn’t quite put my finger on it. Until today.

I came across the Personal Tragedy Theory, coined in the early 1980’s by the disability theorist Michael Oliver. And it suddenly dawned on me what the missing piece could be. We have been conditioned to think a certain way by the media, by our politicians, by government policies, by campaigns (even by some disability rights campaigns in my opinion), by books, films, soap operas…you name it. And it goes beyond the ‘scrounger’ label.

The theory goes something like this: People with disabilities are often seen in the personal tragedy sense, victims of some tragic happening or circumstance. This leads to a feeling by others, and indeed policy-makers, that there is a need to provide compensation.

And this is what bugs me, constantly. It feels that the benefits we are given are a favour – after all, they cost money, so the general public are ‘paying’ for it. But I have always argued that, surely we want to live in a society where people are not discriminated against? But here is where I am singing from a different songsheet to many. I believe that disability benefits exist for the purposes of equality, that they are an anti-discrimination policy. They are not compensation or hand-outs.

But indeed, the way the benefits system is set up encourages this compensation claim mentality. You get an ‘award’. Have you been in a road traffic accident recently? Then you might be entitled to some compensation…. if you can’t walk 20m then we give you an automobile as compensation for your troubles. If you can walk 20m, I’m sorry but you don’t quite hit the (arbitrary) mark. Computer Says No.

But that’s not it. That’s not why the benefits system exists at all. It exists to try to level out the playing field. Take mobility problems. Disability benefits exist so that, due to society not having set up the transport system to accommodate mobility issues well enough, I don’t have to miss out on employment – and indeed paying my taxes and national insurance – or on meeting up with friends, or having hobbies. If you want specific examples, here’s a corker: as part of the Crossrail Project, there have been new London stations that have just been built, from scratch – world’s your oyster with your designs – but 7 were designed with no wheelchair access. That’s on top of, as of 2 years ago, only 24% of London Underground stations being accessible. And here in Hampshire, if I have to use a wheelchair in the future, I cannot then leave my home town by train, because I can’t get over the bridge to the other side of the platform. In 2016. And buses? Don’t get me started.

I am not being ‘compensated’ for my loss of mobility.What society is doing by providing benefits is actively not discriminating against me, not leaving me out of society. The idea is to provide means by which I can participate in the way that able-bodied people often take for granted. I am not being ‘handed money’. I am just not being left out of the most day-to-day basics anymore.

If the benefits system were re-framed in this way, so that it is not a money-based ‘subsidy’ but instead an equal-opportunities policy, would societal attitudes change? Would it prevent the needs of disabled people being a negotiable service that can legitimately be included in a cost-cutting exercise alongside reduced bin collections or a smaller fund for pothole repairs? Would it stop basic independence being put at the very back of the queue? Would it become ridiculous to even consider not giving those with disabilities the resources needed to have an equal society?

If the effect of not having the means, rather than the money, were told by our storytellers, our songwriters, and most importantly our media, perhaps we could re-engage as an inclusive society rather than being governed by pound signs.

Storytelling and drawing parallels allows us to relate to others, so that we can have understanding and empathy, and we can reflect on situations with ease, even if we do not have the experience first-hand. Perhaps you didn’t have the means to make it into the office today. How would your manager react? Or, remember that time you had done your back in and you couldn’t stand up or move your arms for a few days, gosh that was painful. There was just no way you were getting into that kitchen to be able to cook something to eat for the evening. And, man, last week when you had to ring up your bank because they’d cancelled your credit card through suspected fraud, but they’d outsourced to India and the customer service assistants couldn’t understand your accent nor you theirs, and on top of that you’d forgotten your telephone banking password? Nightmare!

These parallels fit for example with mobility issues, chronic pain or cognitive difficulties. So now imagine the inconvenience you’d feel for a week. For a month. A year. Now imagine it forever.

And now imagine you were told ‘ah that sounds like quite a struggle, but really sorry, there’s no money to help you out. And it’s not as bad as this other guy. You’ll just have to soldier on I guess. Life can be hard sometimes’.

How do we move the debate from one of compensation to one of equal opportunity?

We need the day-to-day lives of people with disabilities to be entwined into everyday stories on the TV, radio, internet, in books, films, newspapers. To be talked about on chat shows like everybody else’s worries and concerns are. The narrative needs to be accessible, projected onto what anybody’s day-to-day life entails, to become a normal topic of conversation with understandable reactions. Not told with characters who exist to be the Disabled One. Not specifically on a preconceived idea of a character who’s lived through a tragedy, not that disabled lady character who is having a hard time but wow she is so inspiring isn’t she, pushing through with grit (see the wonderful Stella Young talk about this), nor on that disabled bloke character who, so sad, is not coping with life, it must be hard to have been so unlucky in life. No. The discrimination is happening to someone just like you, with the same wants, needs, interests, habits, worries. Tell our day-to-day struggles alongside others.

I get up each day hoping that we can reframe the narrative and stop moving backwards. There are some things that should not be messed with, that are not up for compromising, nor for haggling. Equality is one of them. That’s what I’m fighting for.

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Creator and author of ManyLemons.com, a blog set up to empower people with multiple sclerosis by sharing knowledge about all aspects of life with MS. I’m an Mser of 7 years who loves to learn, research, assimilate and communicate. I’m a Doctor of Physics, so it’s no surprise that I Heart Science, lapping the stuff up, and I’ve taught, supported students as a tutor, run projects as a team lead and worked as a technical writer, all because I love to share knowledge, inspire, represent, build relationships and listen.

4 Comments

Obviously you’re right, but there’s no hope of changing the way we’re seen. Good luck in trying but I suspect it won’t get anywhere – we’ve moved from a damned awful state of affairs (when George Osborne was chancellor and Iain Duncan Smith head of DWP) to a slightly better state of affairs. But only slightly. And that’s it.

Love this article. I saw this also on the MS Trust forum, with people with MS saying of the lack of resources to treat them, “Well we need to cut costs somewhere.” My internal response was, “How can you just blindly go to the slaughter! Your life is on the line! Did you know that the cancer survival rate here in Britian is 20% lower than in Switzerland! Why aren’t people storming the streets!!? Just in 2013 the treatment rate of MS in the UK was 20%. France and Germany it’s closer to 80% but in the UK people just sign and say “we have to cut costs.” The UK was next worse to POLAND in treating MS. Every other European (and all Western) countries were over double. Also I was in London last week and was horrified at how few stops were wheelchair accessible. It seemed much smaller than 24% to me. In a whole line there might be 3 accessible stop. Nuts. We need to protest, I think. Nationally. And the abled allies among us need to hit the streets for those that can’t due to mobility/fatigue etc issues.

Another writer you may find interesting is Donna Reeve who writes about the contradiction between people with impairments trying to do our best in an inaccessible society while having to prove “how broken” we are (or in reality how society is broken) to access the benefits and support which often enable us to function and be independent at all. Reeve links this in with concepts of gaze and panopticons…

This is one of the most important things I have read for ages. Again I thank you so very much. It really means a lot to me.
Natalya D seems quite ‘sussed’ about the matter too. Gawd I get so mad about how the government treat us disabled bods.
By the way I deliberately spell GOD – incorrectly.

I hope my other comment went through It was under the 12 tips re PIP article.